I think that apart from physical adjustment to this illness and learning how to use your limited muscle strength in the most effective way, there is also mental adjustment.

For a very long period it was important for me to show myself and the world that I can do everything just like I did before.

3 years ago, when I required respiratory support on a daily basis, I sent an abstract of our research to a conference abroad. It was accepted as a poster and I went there. For those few hours of sitting in my wheelchair next to my poster (which no doubt was a true achievement) I paid with a few days of lying in a hotel room, not sure if I am going to survive and 2 months of recovery to the level of activity I had before.

A few months ago, my abstract was accepted for an oral presentation in an international conference (which under normal circumstance mean that I would fly there with no hesitation). I was past "proving" to myself and the world that I could do this. I weighed the pros and cons with my neurologist and some colleagues and decided that someone else could present this work just as well. Those 20 minutes of " glory" were not worth the price. It was much more important for me to preserve my level of activity, so that I could do more work, than to personally present the work that I did.

I don't think I would have been capable of thinking that way 3 years ago. What was important for me then, is no longer important for me now. But this was a process I went through and I doubt there are any short-cuts I could have made.

I think that mentally adjusting to MG is very hard, because it takes time to understand what your true abilities are. Why would you give up activities and adjust to a disability that you don't have? Both you and those around you (including your physicians) think that you can do much more than you really can. It takes time to realize that walking that extra distance today, means that you will not be able to walk tomorrow. It's very hard to make the connection between what you did with what felt like reasonable effort 2 days ago, to the way you are feeling now.